Saturday, March 16, 2019

Tribute to Pastor Dave

Recently we have learned that our Pastor has decided to continue his work in the special needs community and he will be leaving our church.  We all view this as a ministry and an extension of what he taught us every week within the church walls.

Pastor Dave and I met in an organic way, just two guys taking walks around the neighborhood.  Little did I understand that my walk with Tyler would lead us to him and his church.  Dave and I immediately discovered we had a lot in common.  We both had a passion for helping the special needs community, we both love football, and we both want a peaceful world for our children.  And like most people we have very profound differences, especially politically.  But we want the same things in life which is far more important.  Most of all, we both love Tyler and what is best for him.

Our impromptu meetings in the neighborhood turned into Dave introducing us to what would become Tyler's care agency.  My trust in him allowed me to follow his recommendations, which became the very foundation of Tyler's life today.  For this reason alone I owe him so much.

Once Tyler became established in his new home, he started attending Dave's church on a weekly basis.  Within a few months Dave asked if he could baptize Tyler.  We were happy to agree and attend the ceremony.  We immediately felt the incredible inclusion and love that the congregation has for Ty.    This lead to the girls and I attending each week, which has now evolved in my in-laws doing the same.  It has also lead to a few dozen people receiving new study bibles through Tyler's bible program.

As you see, Pastor Dave has touched our lives in more ways than we can count, and we are thankful that he will continue to be part of our lives.  But most of all, I'm proud to call him my friend.

Be well and God bless.    Tom

Sunday, March 3, 2019

But Now What?

Tonight I will tackle an extremely difficult subject.

When Robin and I found out, in 1991, that Tyler was likely to have severe disabilities, we were given the option to terminate the pregnancy.  His prognosis was dire.  Fortunately there was no known danger to Robin regardless of our ultimate decision.  For her and I it was a quick decision....we would love and protect Tyler regardless of what that meant.  I've told that story and some people ask...would I make the same decision all over again?

I would.  And I would love to stick out my chest and claim I feel 100% committed to that and always have been.  That would make me a liar.  I've had doubts, and sometimes I still do.  Consider this:

We are better at keeping people alive medically than we are caring for them.  In other words, science continues to advance to make life longer, or to save more distressed babies, but we struggle to maintain the resources needed to ensure quality of life.  

And what happens when a severely disabled child is born to parents without the physical, financial, or emotional means to care for them?  Often what follows is a lack of care, and the high possibility of neglect and abuse.  And please take my word for this, there are no lines around the block to adopt special needs children. 

Is there a "natural order"?  Until perhaps the 50's, children and adults with severe disabilities had a limited life span.  Was this the way God and nature intended it to be? Have we become so obsessed with medicine that we have taken those decisions into our own hands, beyond what was intended?  This ties into my first point, that our desire to keep a heart beating has outgrown our ability to care for those souls.

On the flip side, we never truly KNOW what will happen.  Afterall, Tyler was predicted to die, or never speak or walk, but he has exceeded expectations and touched thousands of people.  He experiences love and warmth.  Without him the world would not be as bright.

My answer remains yes, I would do it all over again because for US it was the right thing to do.  That said, I would never suggest that everyone had to make the same choice.  If Robin's life were in danger and we knew Tyler was in grave peril, I may have had to make a very different decision.  I wish we lived in a world that guaranteed special needs persons had unlimited love, housing, medicine and care, but we don't live in that world.  If we did I think these decisions would be much more simple.

My hope is this: when faced with a decision like Robin and I faced, that every consideration is carefully considered.  That those parents seek help from family, ministers, doctors, and social workers to have all the fact.  I hope that selfishness gets pushed aside and every opportunity is given to that child and mother.  But no two circumstances are the same, especially when there are substantial medical issues that complicate things.  I don't believe there is a one-size-fits-all answer.  When an agonizing choice has to be made, its up to that person to have to accept it within themselves and before God.  

Be well and God bless.    Tom

Monday, February 25, 2019

So How is Tyler?

We are so thankful that so many people follow Tyler's story.  Hardly a day goes by that someone doesn't ask me about him or tell me that they are praying for him.  As I've said many times, its incredible that Tyler reaches so many people through this blog and through his Study Bible program at church.  I'm merely the hands that type his inspirational messages.

So just how is Ty-guy doing? 

We got to spend time at church with him yesterday, and then took him to his favorite pizza place for lunch.  Shout out to Marinos Pizza in York, Pa. for having a welcoming venue for us to spend some quality time with him.  One awesome thing that has happened recently is that Tyler doesn't mind if Robin sits with him during the church service.  Previously we would sit in a different area so we wouldn't disrupt his routine and possibly make him too distracted to make it the entire hour.  A few weeks ago Tyler came in and Robin sat with him just to see how that would go.  She has been sitting next to him ever since (I am running the video board so I get to watch this from afar).  This is a nice step forward for both Tyler and Robin!

We had a terrific time eating lunch with him.  He seemed to enjoy our company and lingered for quite a long time.  He ate a lot of pepperoni pizza, drank a lot of soda, and had a fair share of onion rings.  He got to do his favorite stim, running his fingers through his Mom's hair.  He also giggled at some of the crazy idiosyncrasies we have always done.  He looked very clean, healthy, and happy.  

His caregiver, Miss R, explained that he has been doing well now that we are headed toward spring.  Tyler suffers terribly from a seasonal disorder which lasts from about November first until March first.  We don't know WHY it happens exactly.  Could be the cold weather, lack of natural light, barometric pressure, or some other force that only his brain experiences.  Whatever the reason, he enters a very dark period for these 4 months.  He is generally more tired, grumpy, defensive, and unhappy.  Some years are worse than others, but that time period is about as consistent as it gets.  Judging by his demeanor yesterday, he is feeling pretty good right now.

When it comes down to it, we have to have faith that he is being watched over, even though I am not the main person doing the watching anymore.  He has an extraordinary group of caregivers and administrators who watch over him.  God watches over him and uses him to carry messages of love.  And of course, his family is always here to watch over him.  

As difficult as it is sometimes to relinquish that "control", we have learned to allow him to live in his world now.  As long as he is healthy and happy we will continue to do so.,

Be well and God bless.    Tom

Friday, February 22, 2019

Happy Birthday Tyler

Today is Tyler's birthday.  Today I celebrate him and everything we have accomplished together as a family.  

When I use the word "family", I mean Tyler's family...those that love him and have done things to make his life healthier and better.  The list would be too long to get into, but he definitely has found a village that rallies around him, protects him, and shows him how much love is possible.

Tyler doesn't speak.  Yet he tells us more about ourselves than any typical person can.

Tyler can't tell jokes.  Yet his smile and his laugh are pure and infectious.

Tyler can't express himself.  And yet the love he gives is sincere and heartfelt.

Tyler is a blessing from God to show us how beautiful life can be, how heartbreaking life can be, and how much we should value family...all family...those by blood and those who are not, because family is what makes us whole.

Happy birthday son.  Love...Daddy

Wednesday, February 13, 2019

My Honor to Honor Him

A week ago I attended the funeral of a terrific lady who I considered extended family.  She was 90 years young and had what appeared to be a very long life of love and family.  There were stories of places she traveled, and experiences she shared with her loved ones.  The service was very nice.  The thought I had as I sat with her immediate family was how clearly they were paying respect and honoring her that day.  She was surrounded by flowers, family photos, and a few small items that were precious to her in life.  I thought my mom and dad 2.0 did an incredible job in the closing phases of her life.  It can't be an easy task to do justice to 90 years of living in one service, and they did it elegantly.

It made me think about my relationship to Tyler.  Obviously I love him as my son, but what I have discovered is that there is an extreme amount of importance to him being honored as a person.  In other words, there is an element where I understand my role in protecting his rights as a man.  It is left to many of us, but I especially feel responsible for being a steward to what is important to his wellness.

I also happened to be watching a documentary last night which showed caregivers making incredibly difficult decisions for their loved ones.  One gentlemen said:  "I promised to always be right".  It struck me how profoundly that statement summed up the feelings of a caregiver making life-and-death decisions.  There is the constant battle between giving in to emotions, and doing what is best based on facts and evidence.

I imagine that every caregiver is just like me...flawed.  I find it very easy to make my own mistakes and poor judgments no matter how hard I try to avoid normal pitfalls.  But I've always made that promise to Tyler, that I would always be right where it concerned him.  Have a always been right?  Not even close.

But lets define what "right" really means.  After all, the outcome of our decisions are sometimes never known.  Or the outcomes can look different over time.  More often, there is both right AND wrong in each side of our decisions.  So what is right?  Right is looking you loved ones in the eye and saying, "what would you want for yourself?".  Right also means being willing to gather all of the facts, weighing the emotions, and having faith.  

Don't worry that every decision is right, because that is not achievable.  Instead, strive to make your heart and mind right when making those decisions.  Be right with yourself, be right in your faith, and be right with your loved one.  Then walk bravely in your choices, and don't look back.

Be well and God bless.  Tom